The price of experience

The personal is political in this extract from Mike Marqusee's new book of writings on living with cancer

June 1, 2014
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11 min read

When I was diagnosed with multiple myeloma in 2007, I vowed to friends that I would not add to the surfeit of cancer confessionals. I had other topics to write about and surely nothing to add on this one, which was already extensively and expertly covered. It’s a promise I should have known I would not be able to keep.

Reconstructing the early phases of the illness-treatment (at the level of individual experience, it’s impossible to disentangle one from the other) is difficult for me. But I do remember the day I first heard the diagnosis ‘cancer’.

I had been feeling pains in my chest and lower back for months and feeling ever more unwell in an all-encompassing way I couldn’t explain, to myself or the doctors. The chest pains were confusing: located not in but over and around the heart. I had reached a stage where I was desperate for a diagnosis, any diagnosis (or so I thought).

When the GP phoned to ask me to come to the surgery to discuss my blood test results, I knew the news would not be good. I wasn’t shocked when he explained that the test revealed a high level of something called ‘paraproteins’, which is indicative of a malignancy. He also observed that I looked terrible and referred me to the nearby Homerton Hospital for urgent examination.

Before we parted he wrote ‘paraprotein’ down on a slip of paper. At home, I looked it up on the internet. The connection with multiple myeloma was prominent. I had vaguely heard of this disease, but knew absolutely nothing about it. That moment marked the beginning of what became a long and continuing process of education.

All I wanted to hear

Later that afternoon, at the Homerton, the examination was thorough and therefore, in a way, reassuring. My heart and lungs were fine and my blood pressure was normal. But when they prodded, as they had to, the places in my rib-cage and in my pelvis where, I later learned, the myeloma lesions had formed, the pain was acute and I had to give it voice.

A strange colloquy followed. Whenever the doctor prodded a sensitive spot, I uttered a loud involuntary ‘Ouch!’ ‘Sorry!’ she responded apologetically. ‘That’s okay,’ I reassured her. Round and round we went. ‘Ouch!’ ‘Sorry!’ ‘That’s okay!’ The doctors made it clear that I had ‘a very serious illness’ and would have to go to the haemoncology unit at Barts for specialist treatment. But, they said, I wasn’t dying from it just then and could go home with my painkillers. Which, by this point, was all I really wanted to hear.

Throughout the day I had been wondering how and when I should tell Liz, my partner, what the last few hours had revealed. I rang her at work and said that I was at the Homerton but was okay and I’d explain it all when we met. My tone was light, even cheerful. She agreed to meet me at the hospital so that we could go home together, and when she arrived, I suggested we sit in the hospital cafe where I would fill her in on the day’s developments.

I was smiling, as if it would be an amusing shaggy dog story. I started out by telling her the good news: there was nothing wrong with my heart or lungs. I look back and laugh at myself. Who was I kidding? Who was I trying to protect? It was a silly thing to do to Liz, who at first took my reassuring noises at face value. When I got to the cancer part, everything changed.

Strange calm, cold terror

In the days that followed my mood was volatile. At times I felt a strange calm and clarity. I walked through my neighbourhood streets, observed the distracted bustle of traffic and pedestrians, and was powerfully impressed with the idea that the larger pattern of life would go on without me. I felt sadness, but no panic.

At other times, I was gripped by a cold terror. I walked down the same streets, observed the same things, but felt that larger pattern of life as a terrible condemnation, a standing rejection of my failed organism. As I passed groups of boisterous children, I was overwhelmed by a fear that I would somehow contaminate them, that they would be well advised to steer clear of me.

About this time the young cricketer Stuart Broad was making a big impression for England in a series against India. The then 21-year-old all-rounder was strong, fit and unabashedly confident in his own body. I couldn’t stand the sight of him and had to turn away from the television. He was a picture of blooming good health and future promise, both of which I had lost and would never regain. I hated him for that. For a moment I was frightened that I wouldn’t be able to watch cricket on television any more – which for me would have been an irreparable loss.

Those contrasting moods soon became less extreme, but I don’t think I’ve ever arrived at a completely settled outlook on the whole experience. That’s at least partly because the experience keeps changing. One phase has followed another and none has been what I expected.

It’s not just that there are good days and bad days, good months and bad months; it’s that they become good or bad in different ways. The relationship between the illness, the treatment and my responses to both is always shifting, posing new issues, problems, questions. I seem to be in a permanent process of adjustment, though thankfully the pace of change has slowed in recent years.

The illness has its own chronology, a separate time moving forward at an uneven rate. Hours, days, months, years don’t stand in their usual proportions. Sadly, it also has a teleology, proceeding inexorably towards an end point.

Sharing with strangers

I didn’t start writing about cancer until more than two years after I’d begun treatment. I didn’t feel particularly compelled to share my miseries with strangers. In fact, a reluctance to do so was one of the reasons it took me a while to address the subject. Much of what any seriously ill person endures is private and intimate. Part of the burden of illness is having to allow strangers access to these realms. The great majority of the nurses, doctors and technicians who’ve treated me have been sensitive to this, but still, it’s one of the costs of the condition. Admitting a much larger circle of strangers into this realm by writing about it made me feel dangerously exposed.

But eventually I did start writing about it.

I had to.

First, because writing itself was a precious continuity with ‘life before cancer’. While so many of my other capacities had been taken away from me, I could still write. And writing about my condition became a means of contact with the larger world, which I found increasingly out of physical reach. It enabled me to engage with that world as a participant, not just a passive spectator.

Second, I was dissatisfied and often irritated by the platitudes surrounding cancer. Some of these, it seemed to me, contained insidious messages that had to be challenged, if only for the sake of my own mental health. The whole individualistic, affirmative tenor of the cancer discussion seemed unreal, a burden people in my situation could do without.

One of my fears has been that I would gradually be reduced to being nothing but a cancer patient. I imagine myself losing my grip on the world. I imagine that world being narrowed down to my immediate discomforts. I had a taste of this when I underwent an autologous stem cell transplant: preoccupied moment by moment with my bodily misery, all other hopes and concerns extinguished.

Not in isolation

A cancer diagnosis marks a sharp discontinuity in life, but it doesn’t mean you cease being who you were before you had cancer: the passions, engagements, anxieties, prejudices, bad habits do not suddenly become redundant. I did not want to treat the cancer as something entirely separate from everything else of concern to me.

In reflecting on my experience, I’ve done so not just as a cancer patient but as a citizen and human being enmeshed in a network of relationships. I have always been keen to avoid compartmentalising my varied interests and had found that the most fruitful approach to any subject was to break down the categories into which it was usually fitted. That approach acquired extra urgency when I turned to writing about cancer.

The illness and the treatment have been unavoidably prominent features of my life but they have not been experienced in isolation. As it happened, the onset of my disease coincided with the financial crisis. Since then it’s followed its refractory course through years of economic recession and increasingly cruel austerity. That’s more than just a ‘background’ to me. Living with cancer has confirmed the feminist adage that ‘the personal is political’. These very private experiences could not be separated from very public issues: in particular, the government’s remorseless attack on the NHS and more generally, the way illness, death and vulnerability are treated in our society.

But I didn’t start writing about cancer with any larger project in mind. The pieces I have written are all responses to particular occasions, news stories, or commissions. The common themes emerged only in retrospect.

Mutual dependence and autonomy

Looking back, the experience has deepened my understanding of our mutual dependence and my hostility to the ideology that denies this. It’s also intensified my commitment to an egalitarian and cooperative social order, not as a distant utopia, but as an urgent requirement of the hour. Of course, all of that is an extension of political values developed long before cancer entered my life. But as the disease unfolded, what I found was that, far from becoming abstract or irrelevant, those values acquired a greater force and reality. I do wonder how a ruggedly individualistic ideology can survive the cancer experience, though I know that it does. What an effort of denial that must involve!

At the same time, perhaps paradoxically, the experience has given me a new appreciation of the preciousness of independence. Much of a cancer patient’s life is taken up with a struggle for autonomy – in relation to institutions, professionals, carers, medications. It’s a hard and often unsuccessful struggle but then so is any real struggle for freedom, which I’ve learned, is about much more than physical mobility.

I’ve been encouraged and often touched by the warm response to my articles from people who’ve had their own experiences of cancer and serious illness. I was also humbled. In comment threads and through emails, individuals recounted and reflected on the most acute suffering and loss. Their circumstances and illnesses were often much worse than mine – except that I’ve learned there really is no hierarchy of suffering.

The poet Heinrich Heine spent his last years confined to bed by a mysterious and brutal illness. After a long and tortuous intellectual journey, he had eventually arrived at his own, highly personalised belief in a god who served for him a special purpose. ‘Thank God that I have a God again,’ he wrote to a friend, ‘so that in extreme pain I can allow myself to curse and blaspheme. The atheist is denied such solace.’ I’ve sometimes regretted not having a divine power I can curse and blaspheme. The powers of this world will have to suffice.

Mike Marqusee is a Red Pepper columnist and author of a number of books on the politics of culture, on topics ranging from cricket to Bob Dylan. His new book is titled The Price of Experience: writings on living with cancer and is published by OR Books